Center for Rural Health

SPREADING THE WORD

Carly Endres (left) and Rebecca Quinn share their knowledge of brain injury at the 2021 Mind Matters Conference.

MIND MATTERS

Pandemic makes the annual North Dakota Brain Injury Network conference even more accessible.

“Always try to find the sunshine in the dark cave,” said Alex (a brain injury survivor panelist who was identified by his first name) during his talk at the 2021 Mind Matters Conference held virtually in March 2021.

Sandi Gruhot agreed. During a different presentation of her own, Gruhot spoke about her stroke journey. A wife, mother, and registered nurse, Gruhot said she first lived in denial that she’d had a stroke that left her with a brain injury. Later she came to realize that the stroke was likely the second brain injury she’d sustained, the first occurring during a water-skiing accident 20 years earlier.

Sponsored by the North Dakota Brain Injury Network (NDBIN), the annual Mind Matters Conference features nationally renowned speakers and highlights new research, trends, interdisciplinary practice strategies, and collaborative models of care for brain injury.

Increased access

Tales from survivors such as Alex and Sandi proved among the most impactful of all the presentations this year, according to feedback from those attending the conference. The survivor

panel, in which Alex was involved, included several men who shared how they sustained brain injuries and the struggles and triumphs they’ve experienced during their recoveries. They also discussed therapies that have been helpful, as well as challenges they still face.

Feedback from the event also suggested that more people were able to attend the conference because it was held virtually this year due to COVID-19.

“I have to say, it was my first Mind Matters Conference, and I kind of love the commute to my kitchen table, casual attire, and the Zoom was easy to access,” one attendee remarked.

And because the 2021 virtual Mind Matters Conference was so well received, NDBIN is exploring the possibility of holding future conferences both in-person and online.

“We were happy to be able to hold it at all this year, but even more happy to see the virtual platform was well received,” said NDBIN Outreach Coordinator Carly Endres, remembering how last year’s conference was canceled due to the pandemic. “Ideally, we will offer a virtual and in-person format. We would like to be able to offer both formats and are exploring those options.”

Building on the survivors’ panels, Wendelin Hume, Ph.D., associate professor in the UND Department of Criminal Justice, discussed the balance between best-case and worstcase brain injury recovery scenarios. She talked about her own brain injury experience and offered tips from her perspective. As several other presenters also suggested, Hume said that brain injury survivors can still continue to improve years after their injuries. She asked that healthcare providers be more encouraging and supportive, listening to their patients and letting the patients help guide their own recoveries.

Along with presenters offering information on the latest brain injury research, healthcare professionals also discussed a variety of treatments available to survivors. During her keynote speech, Jena Gorden, a speech-language pathologist, talked about yoga and meditation and their benefits for brain injury survivors.

The conference also looked at telerehabilitation. Nealey Hoffman, a speech-language pathologist, addressed using virtual care to promote learning following a brain injury.

“This is probably something we are going to have to get used to, the use of technology, whether we like it or not,” she said. Hoffman discussed the pros and cons of telerehabilitation. The pros include everything from not having to travel to being able to use objects in the clients’ own homes for therapy rather than just random items pulled from a box. Cons can include internet connectivity and insurance coverage issues for virtual appointments. Hoffman and others also showed videos of clients using teletherapy services effectively.

All in good fun

This year’s conference included some fun activities as well, such as a virtual scavenger hunt and Bingo game. And 2021 marked the first conference to recognize the Volunteer of the Year and Certified Brain Injury Specialist of the Year awards, according to NDBIN Director Rebecca Quinn. Winners of those recognitions were Sandi Gruhot and Sarah Ring, respectively.

“We wanted to establish these awards as a way of recognizing those who are vital assets and work tirelessly to improve services for individuals with brain injury in North Dakota,” Quinn said.

Such fun is vital, not only for survivors, but also for brain injury caregivers. While Alex advised fellow survivors to stay positive, Alex’s mother, who is also his caregiver, suggested that those who find themselves in her position should research brain injuries and network with others who can guide them to the help they need.

Gruhot talked about living with the fear of a second stroke happening and the realization that she had been wasting precious time worrying about a future she couldn’t control. Instead, she now chooses to live fully every day and find true purpose. She also discussed the importance of support groups and praised NDBIN for connecting survivors, offering learning opportunities through “Webinar Wednesdays,” and providing a wide range of other resources for survivors, caregivers, and healthcare professionals on its website.

“I really encourage you to check it out,” Gruhot said.

By Brenda Haugen

SURVEY SAYS

An Indigenous Elder takes a break from crafting to complete the Native Urban Elder Needs Assessment Survey.

WHAT DO URBAN NATIVE ELDERS NEED?

New survey of urban native Elders dives deep into what they need to be healthy.

Indian Elders living in urban locations are seeking health equity. After all, inequity is all they have known and, often, the lack of resources and historical trauma means that preventive care and serious illness go untreated.

Until now. In 2019 the Coalition on Urban Indian Aging (CoUIA) was created through a unique partnership among six organizations with one goal in mind: improving health equity for Elders. They have planned how to find the data needed to recognize what urban Elders need.

Who is an Elder?

Urban Elders, for the purpose of this project, are defined as American Indian or Alaska Native (AI/AN) people older than the age of 50 and living in an urban area, not on a reservation. In order to increase resources for such people, needs must be identified, which led to the creation of the Native Urban Elder Needs Assessment Survey (NUENAS 1.0).

Dr. Collette Adamsen is the director of the National Resource Center on Native American Aging (NRCNAA), which is administering the survey.

“This project is important because it is about supporting the urban centers who serve our Native urban Elders,” said Adamsen, “by using the identified needs gathered from the survey to assist in connecting them with resources and funding to address those needs. Our Native urban population is underrepresented in national data sets, which is key to identifying and addressing the needs of this population.”

As Adamsen put it, if there are no data to justify the needs, then Native urban Elders are left out of the conversation, especially when it comes time for the allocation of resources and funding.

“This survey will give the Native urban Elders a voice to tell their story through the data to ensure they are represented and not left behind,” she said. “It is our hope that this project will help improve the quality of life for the Elders and work in partnership with the urban centers to provide the support system to accomplish this goal.”

Working Together

Partners leading this effort include: the Administration for Community Living, the National Council of Urban Indian Health, National Indian Council on Aging, Inc., Kauffman and Associates, Inc., and the NRCNAA, AARP, and UND Center for Rural Health.

Members from each organization came together to create CoUIA, to ensure representation from various groups while focusing on the bigger picture: helping urban Indian Elders. There are 137 questions on the survey covering topics such as physical, social, emotional, and mental health service quality; overall quality of life; unidentified needs; COVID-19 resources and care; and others. All questions asked are to provide data to support improvement of health equity, quality of life, and overall cultural responsiveness. The survey was designed to be taken online using computers, tablets, or smart phones – or on paper. Assistance may be given to help Elders fill out the surveys.

The pilot survey site

“There has been a renewed focus on Elders in Nebraska, focusing on kinship roles,” said Dr. Donna Polk, chief executive officer of the Nebraska Urban Indian Health Coalition (NUIHC). “We know there are a lot of Elders who are caring for young people in their homes, and we need to make sure that these Elders are capable and have the resources required in order to do a good job. Whether [the issue] is food security, home security, environmental security, financial security, all of this ties into their health. I was pleased to have been asked not only to participate in the survey but to be the first urban program to do so.” NUIHC, which is located in Omaha, Neb., was the first site to facilitate the survey. It hosted the first group of Elders to take the survey at the Nebraska Urban Indian Medical Center in Lincoln, Neb., and had 26 respondents. Appointments were made so everyone could be spaced in time and physically distanced while in the room. The second survey site was at the NUIHC office in Omaha with four respondents.

Paper surveys were used, and staff was available if anyone needed help or had trouble understanding the questions. An online survey is also available.

“We need this information to justify getting money to increase access,” said Dr. Polk. “If you can’t get to the hospital, it will not have the type of effect we want to see. If you can’t get there, but you had a tablet and knew how to do telehealth, then you increase access. That is why this information is so valuable, so we can figure out who needs what and when and how.”

Recruiting Urban Centers

In April, CoUIA began recruiting urban Indian health organizations (UIO) to participate in the survey. The initial focus is on those organizations with an Elder program. The survey will be administered from May to November 2021. Each UIO will receive an incentive for the organization, as well as funds to provide honoraria for the participants.

“We know this is a first round project with a learning curve,” said Adamsen. “We would be happy to have around 1,000 Elders participate in the survey. If there are more, that would be fantastic. But we want to build partnerships and trusting relationships with the urban centers and the Elders.”

Once the survey is complete, each organization will receive its specific data, as well as access to the aggregate data for urban Elders. Once data from the survey are collected and analyzed, work can begin to increase health equity for this population.

“Working with the urban organizations,” said Adamsen, “allows us to use the data to help tap into funding streams and resources that were not available to them previously. We want to help empower our Native urban Elders to connect them with needed resources to assist them in having a better quality of life.”

To learn more about the survey and the CoUIA, visit uiacoalition.org or email info@uiacoalition.org. The website provides information on the survey, participation forms, release information, marketing material support, and other connections to the survey and the coalition.